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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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xian121905 | @xian121905 | Dec 12, 2022
In reply to @johnbishop "Welcome Tia @xian121905, You will notice that we moved your post into an existing discussion on..." + (show)
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Welcome Tia @xian121905, You will notice that we moved your post into an existing discussion on neuropathy so that you can meet other members discussing their symptoms. You are not alone with your symptoms. Symptoms do vary from person to person depending on their diagnosis and other conditions. Dr. Google can make you crazy on your research journey. Here are my favorite sites to learn more about neuropathy.

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- My favorite search tool - Google Scholar: https://scholar.google.com/

You mentioned that you have an appointment schedule in June. Is it with a neurologist? Have you had any tests yet?

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Hi, I had testing done a few years back but nothing currently. I’m hoping the neuro can help. Are there tests I should ask for specifically

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colonial1 | @colonial1 | Dec 12, 2022
In reply to @jhumm "I will definitely pass along anything I find that might help relieve our mutual suffering. So..." + (show)
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I will definitely pass along anything I find that might help relieve our mutual suffering. So far Gabapentin for pain moderation has been the only useful tool I have found. Some of the other symptoms I have mentioned have actually been the most debilitating for me for the past few years. It might be that finding a reliable way to begin to repair damaged nerves, regardless of cause, could be the most direct route out of this pain filled maze. Stay strong and keep a hopeful heart.

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Blessings and Forza! Strength in Italian. Keep on Truckin’

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 12, 2022
In reply to @xian121905 "Hi, I had testing done a few years back but nothing currently. I’m hoping the neuro..." + (show)
Profile picture for xian121905 @xian121905

Hi, I had testing done a few years back but nothing currently. I’m hoping the neuro can help. Are there tests I should ask for specifically

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Hi Tia, Mayo Clinic has some information on the diagnosis and tests used for neuropathy on the website here - https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067. My biggest question would be what treatments are available that might provide relief for your symptoms.

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atames1939 | @atames1939 | Dec 12, 2022
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
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Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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Thank you - I'm looking forward to receiving the information.

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atames1939 | @atames1939 | Dec 12, 2022

Thank you! I'm looking forward to receving the information.

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 12, 2022
In reply to @atames1939 "Thank you! I'm looking forward to receving the information." + (show)
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Thank you! I'm looking forward to receving the information.

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Hello @atames1939, Welcome to Connect. Do you have neuropathy also? What are your symptoms?

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eep | @eep | Dec 12, 2022

It is challenging to deal with the pain. I've had my neuropathy for several years. It just keeps getting worse. I get these electrical shocks, feels like I put my finger in a socket sometimes just out of the blue I get a shock and it's so bad, I yell or scream. It hurts, I scare people. It would be nice to have some sort of comfort. Why do people have to spoil other people's lives? Just because others misuse drugs, the people who really need them, can't have them. Good Luck Keep trying to find something for all of us

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smicky | @smicky | Dec 12, 2022
In reply to @johnbishop "Welcome @ellbee, I've carried that pre-diabetic tag with me for 20+ years also and have recently..." + (show)
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Welcome @ellbee, I've carried that pre-diabetic tag with me for 20+ years also and have recently thought it may have something to do with my idiopathic small fiber peripheral neuropathy. So, I'm working on getting out of the pre-diabetes diagnosis after doing a little reading on the metabolic syndrome which fits most people in the pre-diabetes category.

-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

Do you have pain with your neuropathy symptoms?

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No pain, but never diagnosed as it is too expensive. Feet feel like something is over them, a bit
like numbness? Does this fit neuropathy? I just finished my annual physical and blood work is
great. No revelations any where; however, we did not discuss neuropathy. I am not a pre-diabetic or anything and am a 79 yr. old female.

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 12, 2022
In reply to @smicky "No pain, but never diagnosed as it is too expensive. Feet feel like something is over..." + (show)
Profile picture for smicky @smicky

No pain, but never diagnosed as it is too expensive. Feet feel like something is over them, a bit
like numbness? Does this fit neuropathy? I just finished my annual physical and blood work is
great. No revelations any where; however, we did not discuss neuropathy. I am not a pre-diabetic or anything and am a 79 yr. old female.

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Numbness can be a lot different things, hard to know without some diagnosis.

"Long-term numbness or a tingling feeling in the legs and feet may be due to conditions such as multiple sclerosis (MS), diabetes, peripheral artery disease, or fibromyalgia. The sensation may be felt in the whole leg, below the knee, or in different areas of the foot."
-- Numbness in legs and feet: Causes, symptoms, and treatment:
https://www.medicalnewstoday.com/articles/321560

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julie11 | @julie11 | Dec 13, 2022

Hello! I've been diagnosed with Small Fiber (Poly-) Neuropathy. I have pain due to sensory symptoms (mostly aches and shock-like pains) as well as autonomic effects (gut pain, esp. at night, from Slow Transit Constipation, STC). I'm in a local pain support group, which is helpful. I also take Cymbalta for the sensory nerve pain and use medical cannibis to help me get to sleep. The hardest part is finding good medical care. It took me three years, numerous specialists, and a provisional self-diagnosis using info from the web to get to the SFN testing. I tried to schedule a follow-up appointment with my gastroenterologist in May 2022, and was told that her first opening is in Sept. 2023. Nobody (except the sympathetic PCP it took me years to find) wants to prescribe opioids, even when badly needed. And while there is a research literature on a connection between SFN and STC, the specialists I see don't both to look at it. And I have good insurance and live a a big city known for its excellent medical care! I'm guessing its even worse elsewhere.

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